DAY 22 Scleroderma Awareness Month: JOURNAL OF SCLERODERMA and RELATED DISORDERS

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by Nicola Whitehill |

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Day 22 Scleroderma Awareness month

DAY 22  Scleroderma Awareness Month:

JOURNAL OF SCLERODERMA and RELATED DISORDERS

1 Week to go until World Scleroderma Day on the 29th June

To celebrate the launch of the first edition of the new Journal of Scleroderma and Related Disorders and World Scleroderma Day, for the last week of scleroderma awareness month, the Journal has a special offer.  Please email [email protected] for further information.

I made the Journal the subject of a blog post a few months ago. To read the post click here

The contents of the Journal show that there are very exciting times ahead for the global scleroderma community, by way of differing biological mechanisms and processes involved in the scleroderma disease pathway being better understood. This of course, is enhanced greatly by global collaboration, making the bi-annual Systemic Sclerosis World Congress a hub of pioneering scleroderma activity. The next World Congress is scheduled to take place in Bordeaux in 2018.

To read my blog post as to why Global Collaboration is so Important, click here.

All in all, there is still a long way to go in reaching the light at the end of the tunnel in making a scleroderma-free-world, but imagine that — a #sclerodermafreeworld 🙂

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About the Author

Nicola Whitehill avatar
Nicola Whitehill Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis...... I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline 'The Real Life Tin Man' and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

Tags

Bordeaux, DAY 22 Scleroderma Awareness Month, Journal of Scleorderma and Related Disorders, JSRD, Raynaud's, Systemic Sclerosis, World Scleroderma Foundation world congress

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